So I was going through my medical files, my records from the old hospital that I’m sending to the new doctor to evaluate to see if she will take me into her service. While going through them, I found some diagnoses that no one had ever told me. One of those diagnoses turned out to be something that is actually quite serious. We are absolutely confounded as to why we were never told about this, why no one ever mentioned it, why we were never given treatment options or even warned about this.
I never go to an appointment alone. I always take someone with me. There are just too many things to remember, questions to ask, comments made, etc., to go alone. Someone else should always be with you, especially if there’s going to be treatment plans discussed or bad news given. You don’t always think of the right questions to ask at the right time, or your brain goes numb and you don’t always hear everything.
But in this circumstance, no one EVER mentioned this to us. We find out about it two years later on a radiology report with a note called “incidental”. It was incidental, because the reason for the CT scan was to search for pulmonary embolisms–again–and this thing they found was not a pulmonary embolism.
They found a type of aneurism. A rare one, one that is very uncommon and almost always surgically treated.
And it just so happens that this type of aneurism frequently can cause aortic dissection or pulmonary arterial descending dissection of the something or another whatever… the point being, it causes something to happen that I saw on Grey’s Anatomy that apparently is almost 100% fatal every time it happens. As in, not much they can do about it once it happens type of thing. Blech.
The problem is, the surgery to fix this condition requires hypothermic cardiopulmonary bypass. Strangely enough, it’s the same thing that is required to fix teh CTEPH. I”m like.. really, Universe? REALLY? I mean, are you telling me that no matter what I do, there’s no way I’m getting out of this life without having open-heart/open-chest, hypothermic cardiopulmonary bypass surgery? Really?
Why?
And one of the reasons I’m not currently eligible for the PTE surgery for CTEPH is because of comorbidities. That basically means other conditions that make the risk of surgery more dangerous for me right now than the risk of NOT having the surgery.
But now, knowing this other piece of information, I have some choices to make. I need to talk to my doctor some more. I need to research and learn more, but that’s hard when this is an extremely rare presentation. Even the little bit of literature on the internet I can find about this says it’s extremely rare and therefore there’s not a lot of information.
There is some good news… the good news can wait, because I want to end on a positive note, so let me start with the bad news first.
The bad news is, from everything I’ve researched, it looks like the choices are either 1) have this dangerous surgery that is very likely to kill me before I even get out of the operating room but could also kill me during recovery or soon after or 2) choose not to have this surgery knowing that this aneurysm could rupture at any point and my heart could get all torn up and I would probably die pretty painfully and quickly–but maybe, just maybe, that will never happen.
Do you play the lottery?
Have ya ever won?
Yeah, me neither, not really. But all these ‘odds’ on the medical stuff keep getting thrown at me, and time and time again, I keep beating them… what the hell? When does my body finally say, “Enough!” and give up? How much more can I take?
And more than that… what kind of life can I possibly be expected to have if THIS is all there is? I talked about that a while back, when I was a bit worse than I am right now, and I have gotten better from that point. I have gone from barely able to hold my own head up in bed, couldn’t stand on my own without help, couldn’t even bathe because I couldn’t raise my hands up above me head and on max oxygen during the day and night–to being on only 2 liters when at rest, able to walk around my house some and able to cook and be active some with my family, with modifications. I have improved. I can’t complain about that.
But how much more can I expect to improve when every time I do, I get hit with something else?
I mean, CTEPH is rare enough, then throw diastolic heart failure on top of it because of the CTEPH then the hashimoto’s thyroiditis, adrenal insufficiency, then my pulmonologist tells me not only does he think I have CTEPH, a type of PH, but he thinks I have PH as well, on top of the CTEPH. I have a rare clotting disorder, which is what started all of this.
And now I have a “right-sided aortic arch and aberrant right subclavian artery with an aneurysm of Kommerell compressing on the superior esophagus”, whatever the hell THAT is.
And then to top it all off, it seems I’m having epileptic spikes as well… oh, and of course, my favorite, fibromyalgia, which should be the least of my worries, but most days, makes me feel worse than all the other stuff combined.
Ugh. Sometimes, I want to just give up. But really, how do you do that? I mean, short of actually committing suicide, which just isn’t ever an option for me when I’m trying my damnedest to stay alive, how do you give up? Just lie around in bed all day until I die? What good does that do? But then, what good does TRYING to do anything do when every time I do, I get hit with yet another thing?
Oh… and the latest whine-fest complaint: Medicare is refusing to pay for my Lovenox injections. I filed for an exception, and they rejected it. I’m filing an appeal and requested an urgent 72-hour appeal, because I have exactly four more days of injections left, and then I’m out. This medication, for the generic, costs $3200 per month. I can’t afford that. Not with all the other stuff I have to pay too; that’s just insane. Insurance will pay for 28 injections in one month. That’s it. They figure that on the amount they are willing to pay for, which comes to .9876 mg/ml per day, and that comes basically to 28 injections. I need 60 injections each month, so I have to pay for the other 32 that are missing, sometimes 34. That comes to something in the neighborhood of averaging about $1780 per month, for just this one medication.
And in four days, I won’t have any left… and without it, I could die. Without it, the IVC filter can clog or develop a clot and I could have a pulmonary embolism, and I could die. Or it could go through my heart, I could survive it, but it goes into my lungs, adds to my clot burden already there, and I end up worsening in the CTEPH. Or it blocks my lungs completely, and I suffocate to death. Or any number or other scenarios, none of which end well.
They want me to switch to a medication that has a lot of litigation going on about it, has no known antidote, and that we don’t even know if it will work on me… and I’m terrified to try it. And then, if I need any surgery, any procedure, I have to go into the hospital for THREE FREAKING DAYS to bridge to heparin,where with Lovenox, it’s only 12 hours.
I don’t know what I’m going to do if they don’t approve it.
The good news, since I said I was going to leave this with good news: Of all the places in the world I could be right now for treating this new condition, the Houston area, with Baylor Hospital, is one of the best places I could be, because they have done a lot of studies on this particular rare condition. So we start the process of finding the right cardiologist within the Baylor system to see me and tell me what my options are and what my odds of having versus not having a surgical treatment is.
So that part is good.
In the meantime, I continue to feel like I’m a ticking time bomb, and it’s starting to really wear on me. I’m no strong or brave or special in anyway. I’m scared and angry and confused. I spent a good part of tonight crying when I got the letter from Medicare denying my medication, asking why anyone should have to beg for the medication they need to keep them alive. Money is so tight right now, and I’m not open to my usual abundance to bring money into my life like I used to be, so I feel like things are just really clamped down tight. We haven’t gone out or done anything really fun that is prosperity and abundance building in a long time, and I resent this whole situation for taking that away from me too, even if it’s my fault for shutting down emotionally.
It’s just not right. It’s so unfair, it’s all so very, very unfair.
I want to scream and throw things and kick the walls… but the truth is, I don’t even have the energy to do that, I’d probably break my toe, end up out of breath and panting, and fall on my ass and bawl like a baby. That’s my luck these days.
Okay… pity party over. Sometimes, I just need to get it out, yanno? I just need to give voice to it, so to speak, to put it down in black and white, to get it out of me and into the world so I can replace it with something better, more positive.
Oh, I’m so trying, believe me, I am so trying.
I love and need you all…
Michy
